IBTA E-News February 2010

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Dear Friend of the International Brain Tumour Community

The Mo Mowlam survey: Over 350 people participated in the IBTA survey based around the story of former UK parliamentary Minister Mo Mowlam who had a malignant brain tumour and told the then Prime Minister Tony Blair it was “benign” and “treatable”. We invited Jackie Weaver, who has an MSc in Social Research Methods and Statistics and over twenty years’ experience in social and market research, to prepare a summary of the initial de-identified data (93 pps) and to outline what your answers reveal. Do brain tumour specialists have a different impression of how their patients will be viewed in the real world? Click here to find out. Two members of Jackie’s immediate family had brain tumours so she brings to the task both a professional and personal interest.

DIPG Foundations Alliance: This Yahoo email discussion group is a place for foundations or other charitable organizations which are committed to finding a cure for Diffuse Intrinsic Pontine Glioma (DIPG), and to assisting families affected by the disease, to coordinate and collaborate. Membership is open to all members of a (brain tumour) foundation or charitable group. Visit here to join. Meanwhile, researchers at Toronto, Canada, following the first comprehensive high-resolution genomic analysis of pediatric DIPG, have identified two “potential, biologically based, therapeutic targets directed specifically at this devastating disease.”

Childhood cancers: St Jude Children’s Research Hospital and Washington University School of Medicine in St Louis have announced a joint project, estimated to cost $65m USD over three years, to decode the genomes of more than 600 childhood cancer patients treated at St Jude. “For the first time in history, we have the tools to identify all of the genetic abnormalities that turn a white blood cell into a leukemia cell or a brain cell into a brain tumor,” said Dr William E. Evans, St Jude Director and CEO.

Roy Rampling: After a career in neuro oncology spanning 23 years, Professor Roy Rampling (University of Glasgow, Beatson West of Scotland Cancer Centre) will retire in 2010.  Brain tumour patients are very grateful for his notable contributions to the world of neuro oncology and those in the UK very much appreciated his pivotal role in publicly advocating for the availability of temozolomide on the UK National Health Service when the National Institute for Health and Clinical Excellence (NICE) turned down temozolomide for reimbursement on the NHS in 2006. A special symposium honouring Professor Rampling - at which international speakers will mark his retirement and celebrate his national and international contributions to neuro oncology - will be held at the 2010 British Neuro Oncology Society (BNOS) conference in Glasgow this June. See this link for further details of the BNOS conference.

Ruben Kruger: Former Springbok and 1995 Rugby World Cup winner Ruben Kruger, who was diagnosed with a brain tumour in 2000, passed away at thirty-nine years of age in South Africa in January this year.

Maria Parakilas: The wife of IBTA associate Troy Kaizik passed away on 20 January from a GBM. Maria was thirty-nine years of age and the mother of two children, Ben and Gabi. Her brain tumour was first diagnosed in Israel while Troy was on a work posting to that country. Troy has maintained a blog recording how he and Maria dealt with the challenges they faced.

Clinical Trials: Professor Michael Baumann, President of the European CanCer Organisation (ECCO) has supported criticism of the EU Clinical Trials Directive saying that it has had a catastrophic effect on academic clinical research. He said that children and those with rare cancers had been particularly hard hit. Meanwhile, the European Association of Neuro-Oncology has announced its 2010 grants program for European researchers.

IBTA 2010 Magazine: The IBTA is planning to publish a world edition of a magazine with news of the international brain tumour community.  One of the features will be a series of "pen portraits" based around the two themes of "Challenges of brain tumour treatment in my country" or "What gives me hope as a brain tumour patient (or family member/caregiver) ".  We are inviting short written pieces from brain tumour patients and their family members/caregivers of no more than 200 words based on these two topics.  You can choose to submit a piece on one or the other of these two themes. We are happy to publish these with substitute names to protect patients' and caregivers' privacy.  All pieces are subject to editing for clarity and length. Acceptance of these pen portraits is subject to available space in the magazine. Please email your submissions to chair@theibta.org or Kathy@theibta.org. Please include the name of your country.

Brain metastases guidelines: As mentioned in previous E-News editions, new (US) guidelines for the treatment of brain metastases were released late last year. A summary of the main recommendations is available from the AANS website and the articles and guideline Chapters are available at this webpage for open access download in PDF format from the SpringerLink website for the January 2010 issue of the Journal of Neuro Oncology.

Low grade gliomas: These brain tumours are sometimes the “orphans” when it comes to a focus of research attention. Professor Ali Choucair (USA) is writing a proposed clinical trial for low-risk Low Grade Gliomas and has advised that there is an opportunity for funding by interested bodies of the primary and secondary outcomes (e.g. Quality of Life, neurocognitive function, etc). Professor Choucair may be contacted here.

2010 supporting organisations: The IBTA has commenced emailing invitations to brain tumour, neurological and cancer organisations seeking their permission to be listed as supporters of the IBTA’s two annual projects of the Walk Around the World for Brain Tumours (1 January – 6 November, 2010) and the International Brain Tumour Awareness Week (31 October – 6 November, 2010). Those who have not yet responded should do so to: chair@theibta.org

Drug developments: Merck and Co Inc has said it will appeal a decision by a US Federal Court judge that its (US) patent for Temodar is unenforceable, thus allowing Teva Pharmaceuticals USA Inc to sell a generic version. Merck states that it believes its US patent “is valid and enforceable”.

Christopher Reid: UK poet Professor Christopher Reid has won the prestigious Costa Book of the Year prize ($47,000 USD) for his book of poems (“A Scattering”) about his wife’s illness with a brain tumour and the effect on him after she died in 2005. His wife was the actress Lucinda Gane. In one of the poems Reid writes of the hospital where Lucinda willed her body to medical science: “My wife is in there, somewhere, doing practical work: / her organs and tissues are educating young doctors / or helping researchers outwit the disease that outwitted her. / So it's a hallowed patch of London for me now.”

Thank you for your continuing support.

Denis Strangman (Chair and Co-Director)                                     
International Brain Tumour Alliance IBTA 
www.theibta.org

Kathy Oliver (Co-Director)
PO Box 244, Tadworth, Surrey
KT20 5WQ, United Kingdom
Tel:+ (44) + (0) + 1737 813872
Fax: + (44) + (0) +1737 812712
Mob: + (44) + (0) + 777 571 2569

The International Brain Tumour Alliance is a not-for-profit, limited liability company registered in England and Wales, registered number 6031485.  Registered office: Roxburghe House, 273-287 Regent Street, London W1B 2AD, United Kingdom.  All correspondence should be sent to the Co-Director’s address above, not to the registered office.

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